Newly diagnosed any advice would be very much appreciated.

[Angcav]

I was diagnosed 2 weeks ago with crest disease. Today has by far been my worst. Apart from the fatigue and awful brainfog. My.hands are cold and so painful. But the worst has been muscle weakness from both shoulders down inside arms to thumb pad. I'm finding it difficult to even lift a cup of tea. I feel I've been given a diagnosis then left high and dry. No support at all.😢

[Mylreaclairelee]

Sorry to hear that you feel very alone with this dreadful disease. Perhaps you could reach out to others in your area where you can support each other. I have found others in my area and it helps so much. We are in the Birmingham wide area and I am in Shrewsbury if you are anywhere near.

Your specialist and doctor are your main help obviously but you can always ask to be referred to the Royal Free in London where you get really excellent help.

[Fluffy2]

Hi

I'm so sorry to hear about your painful symptoms.

It may be worth going to your GP to get your pain under better control as pain can really disable you. I know doing this was a turning point for the pain I experienced. I have a different condition but arm and hand pain were part of this and dreadful. I remember crying when I couldn't reach to my cupboard to get my tea bags out.

If you have seen a rheumotology consultant he may have a team of phsio and occupational therapists that could help you. You could ring his secretary to ask if you want to.

I hope that this helps.

[redtree]

You have not said what medication you have been put on...that does help with pain and other symptoms though it sometimes takes a few weeks to kick in. When I was diagnosed, the rheumatologist also arranged a MRI to check for muscle weakness, and a CT scan to check lungs, so that they can determine the most effective medication depending on your situation.

If that has not been done for you, please ask for it.

It is a complicated disease but the medication can help enormously.

Good luck!

[Sanmateogirl107]

ask your doctor about pt now. hand pt as well. use biofreeze topical creme its great. pyrofin wax is good for the feet and hands. go to a rheumatologist and a pain specialist immediately. get a second and a third opinion. be your own advocate. hope that helps. julie

[Angcav]

Thank you all so much for replying. Currently the only pain meds I am on are cocodamol 30/500. I was offered gabapentin but I've read so many bad things about it I said no. My blood pressure tabs have been doubled as my B/P was very high. Doc said that is why my.hands were so cold and discoloured. I am waiting on hosp app to have heart checked other than that I'm pretty much in the dark.

[tall-tim]

Hello Angcav,

In 2015 I started feeling bad and having muscle weakness so I thought I'd end up in a wheelchair. My consultant ran an emergency suite of tests on me, including a muscle biopsy, and as a result myopathy was diagnosed on top of CREST. He put me on Methotrexate (15 mg per week) and blast of steroids (Prednisolone, starting at 60 mg weekly then tapering down to nothing over two years). It had the effect of stopping the rot, and now the myopathy has gone.

It would be good if you could try to get a myopathy diagnosis.

Best wishes,

Tim

[Angcav in reply to tall-tim]

Hi Tall-tim I have an app with my GP on Wed. The muscle weakness is in both my arms though much worse in the right arm. I just don't know what is going on with my body just now and at times I feel scared. I will definatly mention to doc what you have said and thanks very much for your message very.much appreciated.

[Hidden]

Hi Angcav

😢

I felt the same about the support I have had from my consultant but this forum has been a great place to discuss various symptoms and advice from others who are in the same position. It seems a big battle ahead of us not only to get used to the diagnosis but to get the right treatment.

I think probably treatment is difficult due to the nature of the illness. The thing is to try and find a good GP to support you. The sruk website is good for information and they also have support groups locally so maybe you can find one near you? There is also a telephone line for support. There is a phone number on the website. I hope this helps.

[Angcav]

Hi clover222

Thank you so much for your reply. I am so glad I came across this support group as don't feel so alone now. So you mind if I ask do you suffer from overwhelming tiredness? I make plans to go somewhere and at the time my head thinks no problem but my body says otherwise. I end up having to go lie down not necessarily to sleep just to rest. Makes me feel really down to be honest. Take care.